Friday, August 14, 2009

Connie's Grandma Marybelle and the daughter of a friend from church, Hannah Martin, handmade him pillowcases and a blanket for use during his upcoming hospitalization. They are all themed after things he loves--Elmo, Thomas, animals and monkeys! Below are the pics I took of them. Aren't they cute? Thanks Hannah and Grandma! My brother's family from Texas came up for a visit this past week and brought with them a special cross and pocket charm for Connie to take with him too. Thanks guys! There's even a pic of him eating a snack while I took the pictures.This one even says "brave". . .

Thursday, August 13, 2009

Hello Everyone! One of Conway's biggest fans, Carol Stadler, has graciously volunteered to organize a fundraising event to benefit Connie and help out with the health insurance premiums (COBRA) and lodging, etc. for his trip to Michigan. On August 24th, from 5pm-8pm, we hope you can make it out to the Applebee's in St. Peters for some food, fellowship and fun--for a great cause! You will also have the opportunity to purchase a "Pray 4 Conway" wristband and give Greg and Mary Kathleen a hug on Connie's big cath/pre-op day. Click on the link above for directions. You MUST present the coupon in order to have a portion of your meal donated to Conway's fund.

You know you're getting close to the surgery date when the doctor's office calls you and wants you to start decreasing and stopping certain meds. During the catheterization and the EP study, they will actually be inducing atrial flutter so that they can map out exactly the part that will need to be cauterized or whatever during the surgery. Therefore, he needs to stop the amiodarone by next Monday and we've already cut his dose by one third. Now we just have to cross our fingers that what he's taking now is enough to prevent an episode of flutter before the 24th! Also, he needs to stop the coumadin about 10 days before any invasive procedures so that means today or tomorrow will be his last dose of that. I think Colleen is checking with Dr. Bromberg to see if he just wants to have us send in a pacemaker tracing today and if it shows no high rates just stop the coumadin now.

I am really going back and forth between feeling like I'm dying to get up there and get this part of the process over with, and wishing we could put it off another six years or so. I just don't know how I'm going to deal with those eyes looking at me with that "how could you do this to me" look. It's not like we can tell him it's for his own good and reason with him. It's not like we can say, "but you'll be able to go up the stairs again and play and have more energy." I am starting to think he prefers being carried around and spoon-fed anyway!

He had speech today and did great. He's getting a little fiesty when it comes to only wanting to play with what he wants to play with. He was loving these cards that Ms. Chris brought but when she wanted to play with something else to work on a different skill, he balked and fussed until she gave in and let him play with the cards. He's even got her wrapped around his little finger now! Oh well. She agrees that we can push him after he's feeling better. Stinker.

Wednesday, August 12, 2009

Tuesday, August 11, 2009

We took the family out today for an updated family portrait (we haven't had a "real" one made since 8/07) and some shots of Connie before the big day. I'll post a teaser now and the rest after Greg works his magic on them. Our scanner is horrible and the cd they gave us have the pics in their original, yucky state.

Sunday, August 9, 2009

. . .so I thought I'd update to tell you all nothing much has changed! We are liking the rather mundane, dull, boring, etc. last several days. Connie hasn't thrown us any curveballs and it has been nice! We've been spending lots of time with family and friends and his cousins from TX even made a special trip up here to see him. He's been eating more (actually asking to eat!) and has generally been acting like he's feeling better. He even climbed the stairs a few times and is carrying his laptop around again! He has a couple of "regular kid" things coming up on the calendar including library story time and a couple of "not-so-regular kid" things coming up like more labwork and a pacemaker phone transmission. He's getting his labwork done tomorrow to check his INR and next Monday, we are going to check the pacemaker and if it shows no history of high rates or atrial flutter, then he'll come off the Coumadin on 8/17, a week before his cath. I thought I'd share a cute thing he did tonight. He and Mookie were sitting at the table having a bedtime snack and watching Wall-E while Greg and I were in the living room. When it got to the part where the rocket was landing and there was an explosion, he yelled out, "Oh noooooooo" so emphatically it was ridiculous! It was such appropriate timing and so hilarious! Greg and I just started laughing and praising him. We didn't even think he was paying attention to the movie at all and then out of the blue comes this comment!

Conway's Heart Story

Conway's Heart Story

Conway David Beckemeier was born on March 3, 2007. His heart defects went undetected during pregnancy and he was diagnosed at two days of age with L-TGA, a large VSD, sub pulmonic stenosis and Ebstein’s Anomaly. Just before turning six months of age, he underwent open heart surgery to reroute the bloodflow in his heart. Called the "double switch", this procedure is the most technically challenging for pediatric cardio-thoracic surgeons to perform. The version of the double switch that Conway received on 8/28/07 was called the Rastelli-Senning with VSD closure and sub pulmonic resection. He suffered a grand mal seizure following the surgery that lasted over an hour and had several other post-op setbacks including surgical heart block, which required another operation on 9/18/07 to insert a pacemaker. Following surgery and such a long hospital stay, Conway developed an oral aversion (he would not eat) and he was 100% NG tube fed for eight months. He also lost muscle tone and required both physical and occupational therapies. In April 2008, he had a cardiac cath and attempted balloon angioplasty on his pulmonary arteries that did not work. Although his recovery was very long, he had a solid year or so of being a "normal" kid . Then in May of 2009, it was discovered that Conway was having rhythm disturbances, specifically atrial flutter. His pacemaker allowed it to go undetected for several weeks until he showed signs of heart failure and was admitted to the ICU for a week to be placed on IV heart meds and undergo cardioversion on 5/6/09. He went home and his heart function started recovering when he had another episode of flutter (6/16/09). This time, he was again hospitalized and put on IV milrinone, but he converted back to normal sinus rhythm by himself. At that time he was placed on the anti-arrhythmia drug, amiodarone. On 7/22/09 he had to be cardioverted again for yet another episode of flutter. The following week, he got worse instead of better. His cardiologist did a full work up and it was determined that his aortic, mitral and tricuspid valves were all leaking worse and were felt to be the cause of his heart failure. On 8/24/09 he had a cardiac cath and attempted ablation. The electrophysiologist was unable to induce a single arrhythmia. Then, just two days later, he went into atrial flutter on his own. He was placed back in the cath lab where he underwent mapping and a total of 17 burns were made to try to knock out his arrhythmias for good. The next day, 8/27/09, he had his second open heart surgery to repair his mitral valve called ring annuloplasty. He also had a partial Maze procedure done. His surgeries are performed at C.S. Mott Children’s Hospital at the University of Michigan (Ann Arbor). This time he was discharged just six days later! His Left Ventricular function improved drastically. In December 2010 we noticed he began getting more winded during physical activity. A January 2011 cath showed that he is outgrowing his RV-PA gortex conduit, but he was not symptomatic enough to warrant intervention.In April 2012 Conway’s fatigue increased and an echo at the end of May revealed that the ratio between the right and left sided pressures has gotten too high and it is time to replace the homograft that was placed when he was five months old.He had a cardiac cath on 5/25/12 which confirmed the echo findings. He had surgery on 8/8/12 to replace his pulmonary valve and RV-PA conduit, add an additional pacing wire to his left ventricle, and change his generator to a bi-ventricular model which is shown to preserve function and help the heart muscle pump more efficiently/effectively.